The Netherlands

In an introduction to Faces behind Rheumatoid Arthritis [2], a book presenting several Dutch patients’ fascinating stories, we could read that people with RA can experience fatigue every day without having worked hard or exercised. This is a key difference compared to “normal” fatigue. The severity of fatigue is completely disproportionate to the activity or the effort that has been made. Many people with RA have learned to say nothing during a flare and simply accept the pain and fatigue. But patient-partners of National Association Reuma Zorg Nederland, the national patients’ organization of people with rheumatic and musculoskeletal diseases (RMDs) in the Netherlands, are well prepared to say a lot about the patient’s perspective. They have years of experience building a network of patient experts. Patient participation in research and also in educating medical students and health professionals about rheumatic diseases is growing in the Netherlands. At present an excellent network of 60 trained “patient-partners” covers a country, supports research projects and meet 4 times a year during the network meetings to develop their skills. Patient-partners can grow from being a patient (experiencing an RMD), to being a patient-informant (being able to talk about personal experience with an RMD), to being a patient-partner (being able to talk about experiences of people with RMDs) to eventually becoming a patient advocate (being able to talk about experiences of people with RMDs and to advocate change). Patient-partners differ with regards to the stage in which they feel comfortable. Basic principles of patient participation in research for researchers, as commissioned by the National Association Reuma Zorg Nederland, are the following:

An interesting approach of the Dutch association is to explain the practice of patient involvement to researchers with a guideline for researchers in the form of a main questions. “Why do I want to involve patients in my project? Why does a patient want to be involved in my project? What kind of result do I want to achieve by involving a patient in my research project? At what point in the research circle do I involve a patient in my project? What role does the patient have in my research project? (gathering information, expert, interviewer…). Which patient with which characteristics do I involve in my research project? (experienced expert, trained – untrained, level of experience; with the condition, caregiver, parent; age, gender, residence, education, work situation). Which method? (brain storm session, patient panel, focus group, focus group online, talk with patient organization, interview, observation, workgroups, patient diary, patient board, theater – role play, questionnaire). Which requirements? What conditions apply to the collaboration? Draw up a written agreement. Describe the timeline including deadlines, the communication moments and the evaluation possibilities. Reimbursement of costs incurred by the patient: travel, parking, food, lodging. Which appreciation? Consult with the patient involved, perhaps he/she has different ideas about an appreciation than you have as a researcher. Describe the appreciation the patient receives for his/her involvement and input. What can go wrong?” (A research question can change during the project. The needed contribution of a patient-partner to a specific phase of the research cycle can change. The patient wants a different role, but the role is given to a professional. The patient becomes ill, dies, stops, etc. The tasks for the patient-partner turn out to be too time-intensive, not doable. There is a conflict and one of the parties wants to revise the conditions. The patient does not get to be a co-author in the publication).

The Dutch Association also works with a simple check-list when patient-partners are asked to evaluate a research proposal. This checklist consists of questions such as: Is the research question clearly defined? Is the aim or the project applicable in everyday care/practice? Does the research contribute to better diagnostics? Are the risks for the participants clearly defined? The checklist can help patient-partners in their final judgement: is the research proposal worthy of funding from a patient perspective?

Sweden

As Swedish medical scientists say, patient involvement can optimize the ethics, relevance, accountability and transparency, communication, promotion and implementation of research outcomes.

In 1988 Peter Lipsky [3], University of Texas, described the first example of the positive impact of arthritis patient educators in rheumatology care practice. In Sweden, patient research partners (PRPs) have been educated to participate in research projects since 2008. In total 60 PRPs have been educated. At the moment 40 PRPs are actively involved in research projects. All have participated in a two-day basic education course. Every year the basic education is provided for new PRPs. A continuation course for present active patient partners is provided every year. Both the basic and continuation course include group exercises and activities where experienced PRPs share their knowledge with newly educated PRPs.

The Swedish Rheumatism Association (Reumatiker Förbundet) funds scientific research in rheumatology. Last year – 2019 – it distributed 1.55 million EUR to 96 research projects. In Sweden PRP involvement in research is becoming more common. The PRPs participate in activities to identifying research gaps that are important and relevant to persons with rheumatic disorders. In a cooperative initiative the Reumatiker Förbundet, the Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) and researchers work to develop a systematic literature overview article with the goal to reveal the scientific evidence and knowledge gaps regarding the effects of rehabilitation in rheumatic diseases. We have heard that funding research without mapping existing research is like going shopping without checking what you already have in the cupboard. The SBU carries out James Lind Alliances activities including patients and health care professionals to identify and prioritize the most important evidence gaps for that patient group. Also, the SBU evaluates scientific evidence gaps to be found in the literature. These activities presents research questions that are of importance to “the end users”.

During the seminar in Stockholm “A short guide, for researchers, to successful patient involvement in EU funded research ” was presented [4]:

Patricia Pennings from the Netherlands urges: “Patients want their voice to be heard from the very start of a research project, even before the first research proposal is actually written, even before research funds decide what to use their funding for”.

We firmly believe that the time has come to learn a lesson from the practice of patient participation in the Netherlands and Sweden. Health care is changing in Poland. There is a shift from the focus on disease to a focus on health, prevention and life style. Chronic diseases, such as rheumatic conditions, require personalized health care and patient participation in decision making. However, the health professional in Poland today is not yet prepared for this change. Innovative education programmes for medical students in Poland promise professional development. New generations of medical doctors will be enabled to see the patient’s perspective and gain valuable patient interaction skills.